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A Simple Fact Sheet on Albinism

In a sentence, a person with albinism is a person with a vision impairment and has fair skin. With the use of some very simple aids, (magnifier, enlarged print, etc.) and with adequate skin protection, a person with albinism can look forward to leading a normal, healthy life. Obviously there are problems, but with some lateral thinking, many problems can be overcome, or at least, worked around.

To parents of newborn babies and young children with albinism - you will learn from your young ones as you watch them grow - you will share in their achievements, and grieve in their disappointments, just like any parent of any child.

To anyone with albinism - there are many goals to be achieved and opportunities to help you. Obstacles are what you see when you take your eyes off your goals. With perseverance, your goals can be accomplished and you may enjoy a most rewarding journey along the way.

What is Albinism?

Albinism is an inherited disorder where there is either total absence or decreased production of the usual normal pigmentation. The pigment concerned is called melanin and only occurs in certain areas of the body. If there is pigment deficiency, it will not have any adverse effects on other body functions such as intelligence, heart, kidney, lungs, liver or general well being.

For melanin to be produced, the enzyme Tyrosinase, is a necessary part of the chemical process. In albinism this enzyme is either absent completely, or is present in a reduced amount and does not produce the normal amount of pigment. Hair roots can be chemically tested in a laboratory to determine the presence of Tyrosinase and any resultant pigment.

Another effect of albinism is on the pathways of the optic fibres. This does not affect intelligence (see below), but can be tested and can be useful in confirming the diagnosis of albinism. Albinism is also a very varied condition, some people have no skin pigmentation, others have normal skin pigmentation, but reduced pigment in the eye. (see Are There Different Types of Albinism?). Some people have very poor vision, others virtually normal vision, although most have some visual problem. It is important to view each person with albinism, as an individual, with particular strengths and difficulties.

A commonly held misconception is that people with albinism do not have normal intelligence. The truth is that albinism does not cause intellectual disability. The incidence of psychological or psychiatric impairments, is the same for people with albinism as with anyone else.

What is Pigment?

Pigment is a substance, such as chlorophyll or melanin, that produces a characteristic color in plant or animal tissue. The pigment melanin is normally present in skin, eyes, hair (including eyelashes), some mucous membranes (eg. the lining of the mouth) and the inner ear. If pigment cells gather into significant clumps in either the skin or the iris of the eye, they are commonly referred to as freckles or moles.

Under the influence of direct sunlight, the melanin (or pigment) production of the skin is increased, resulting in a "tan." People with albinism have reduced ability to produce pigment. Some can produce pigment in the skin and hair, but not the eyes. Obviously, a person who has albinism affecting the skin (oculocutaneous albinism), with little or no ability to produce pigment, the result, when exposed to sunlight, would NOT result in a tan. In fact, a person with albinism, would burn quite quickly, without the protection of SPF 15+ sun screen.

Are there Different Types of Albinism?

Yes. The more common types of Albinism are:

Oculocutaneous Albinism Tyrosinase negative
(OCA - ve) - reduced pigment (melanin) in the skin and eyes due to lack of enzyme Tyrosinase.

Oculocutaneous Albinism Tyrosinase positive
(OCA + ve) - reduced pigment (melanin) in skin and eyes, where the enzyme Tyrosinase is present, but other factors reduce the production of melanin.

Ocular Albinism
(OA) - reduced pigment in the eyes only.

How Common is Albinism?

An incidence for all types of albinism in the Caucasian population of one in 15,000 is generally accepted. Oculocutaneous Albinism is by far the more common form, with Ocular Albinism accounting for between 10% to 15% of all cases.

What Causes Albinism?

Albinism is genetic. For nearly all types of albinism, both parents must carry an albinism gene to have a child with albinism. Parents may have normal pigmentation, but still carry the gene. When both parents carry the gene (and neither parent has albinism), there is a one in four chance at each pregnancy that the baby will be born with albinism. This type of inheritance is called Autosomal Recessive Inheritance and is the most common type of inheritance of albinism.

Can people with Albinism have children?

Albinism does not limit a person's ability to have children.

Offspring of parents with albinism may or may not have albinism, but could carry an albinism gene which can be passed down through generations. Their children may also have albinism, but this will depend on whether their partner also carries an albinism gene. Both partners must carry a gene for albinism for it to occur in their children.

At this time, there is no reliable testing available to see if a person carries an albinism gene.

If two people with the same type of albinism have children, then those offspring will inherit the same form of albinism as the parents.

Can Albinism be cured?

As albinism is rare, there is comparatively little research being done into the disorder. There is however, ongoing research being done in The University of Wisconsin, USA, which has led to the discovery of a particular gene that causes albinism. However, at this stage albinism is a genetic irregularity which cannot be cured.

Do people with Albinism have adequate vision to obtain a driver's license?

Most people with ocular albinism have vision acuity of 6/60 or less. State laws vary, but generally, sight of at least 6/18, as measured on the Snellan Scale, is needed to obtain a driver's license. Therefore, obtaining a license is not usually possible.

What sports can a person with Albinism play?

Suitability for all sports is pretty much by trial and error. Indoor sports are preferable because of lighting and protection from the sun, although involvement in athletics can prove to be beneficial. Swimming is a good choice (especially in an indoor pool) and Billiards is also ideal. Outdoor ball sports can sometimes prove to be difficult. It is important however, that the individual determines for him/herself where the limitations lie. Of course, there are many other areas of involvement that can be explored in any sport, other than direct participation, for example, administrative and support roles.

How will my child cope with school?

School can be more difficult for a child with albinism because of their vision problems. The difficulties that will arise include blackboard or whiteboard work, small print in books, lighting, social interaction and limited information available to teachers.

However, most students can function in a mainstream or regular classroom environment, provided the school gives specific attention to their special needs. A variety of aids is available to help children with vision impairment and your state's Blind Society may provide advice and information. Primary and High School support for vision impaired students, is usually available from a visiting teacher. In some states, this support is also available to pre-school children. The support teacher will visit the school on a regular basis, advising the teacher and students, if necessary, on anything relevant to the welfare of the vision impaired student (including vision aids). This is an important service and can help parents tremendously to ensure their child is receiving the best possible support available.

Support for tertiary studies is usually available also. For information on this contact the blindness agency in your state.

What precautions do people with Albinism need to take for protection from the sun?

People with albinism tolerate reasonable amounts of sun exposure if they use SPF 15+ sun screen, adequate clothing, ie. UVray resistant, long sleeved shirts and hats and avoid being out in the sun during the hottest part of the day (11.00am - 3.00pm). Sun screen should be applied approximately half an hour prior to exposure to sunlight, so that it has time to chemically bond to the skin. With increased awareness of sun protection, these precautions are becoming much more mainstream, especially in schools. In a way, people with albinism have been ahead in realising the importance of sun protection.

What employment opportunities are available?

People with albinism are employed in many different and varied fields, eg. the medical profession, law, journalism, clerical, accountancy, nursing, sales and various public and private enterprises and industries. A good education or relevant training will assist to increase employment opportunities. As time goes on, the job market has become more competitive. Anyone with a disability can be at a disadvantage. Some employers may still believe that a person with a disability cannot possibly be as efficient as a "normal" person. There are however, programs in place to help educate the employer and incentives to provide any relevant equipment that may be required for the employee with a disability, eg. vision impairment. Tertiary institutions are also well set up to support a person with a disability, so there are opportunities to continue with further education/training programs, thus leading on to better career opportunities.

Where Can I contact Others Affected by Albinism?

In Australia, the Albinism Fellowship and Support Group Inc Australia is a voluntary organisation that provides support, advice & information for children and adults. It also offers a free booklet "Albinism: Awareness and Understanding". Services include an annual Christmas party, providing advice on genetic, skin & eye problems and self-help & family support for children & adult members. You are eligible to join the AF&SG if you are a person or organisation interested in the welfare of persons with albinism

President: Michael Wilson: Phone +08 8251 4313
Secretary Lisa McNeil: Phone 08 8326 4070The mailing address is:
Albinism Fellowship and Support Group Inc Australia
18 Baden Tce,
O'Sullivan Beach SA 5166